With our heads held high, Michelle Santizo, RN, PHN, MSN, and I walked right into Capitol Hill, ready to tackle meetings with important members of the U.S. Congress. On that day in July 2019, we spoke with staff members working for the offices of both Kamala Harris (D-CA) and Diane Feinstein (D-CA).

The high cost of prescription medications—often lifesaving drugs—has become an unsustainable burden for many American patients. It’s a central topic in the healthcare conversation and a complex issue with countless moving parts. National opinion polling finds that a majority of people want to see changes in drug pricing.

The decision to allow Medicare to cover the cost of CAR T-cell therapy—a new and expensive form of immunotherapy—is an important one for patients seeking the treatment, especially after rounds of failed tradition therapies. Educating federal agencies and government representatives about the importance of new treatments like CAR T cells have helped drive coverage decisions, and the patient advocacy community—like ONS’s very own advocates—are to thank.

Health care is the top domestic policy issue for Americans, but with so many different ideas to make the healthcare system more accessible and affordable, the issue is becoming increasingly complex. Because of its far-reaching impact, health care is often a politically charged topic and little change has yet been seen on a legislative level.

For nearly two decades, smoking rates among all ages were on the decline. Restrictions on marketing, sales, and distribution made it difficult for underage smokers to get their hands on traditional cigarettes, and adults were seeing the benefits of smoking cessation campaigns and education.

In divisive times, fewer congressional bills find their way to the president’s desk without considerable bipartisan support. The dance of legislation is complex. Maneuvering through the legislative terrain and avoiding political landmines requires partnerships, expert data, and—at times—a little bit of luck. In the case of the Cancer Care Planning and Communications Act (H.R. 3835), that’s the story so far.

It’s an extraordinary time for biomedical research. Advancements in science, investments in research studies, and an increased access to patients through clinical trials have continued to transform the medical community’s understanding of cancer care and the best ways to treat and cure tumors. Achieving successful outcomes requires specific and dedicated therapies, tailored to each individual.

Few know the power that prescription medications have on the quality of life for patients more than nurses. In more than just physical ways, access to affordable drugs is essential to patient-centered care and emotional, psychological, familial, and even financial stability. For too long, the cost and availability of medicines have been barriers to health care, rather than opportunities for survivorship. 
 

As health care advances, so too does our understanding about the numerous conditions affecting patients, including their mental health and well-being. Messaging from federal agencies like the Centers for Disease Control and Prevention (CDC) about mental health is taking an inclusive, wholistic approach to the many aspects of mental health. CDC presented new educational applications for providers to consider when talking to their patients about mental well-being and their continued success in treatment.

The Presidential Early Career Award for Scientists and Engineers (PECASE) is the highest honor early-career professional researchers can receive from the federal government. On July 15, 2019, two nurse researchers were included among this year’s recipients. National Institute of Nursing Research-supported scientists, Sarah Rossetti, RN, PhD, and Tracey L. Yap, PhD, RN, WCC, CNE, FGSA, FAAN, were acknowledged for their promise and leadership in nursing science and patient-centered research.

The Palliative Care and Hospice Education Training Act (PCHETA) is a key ONS policy priority. After unsuccessfully navigating both chambers of the 115th Congress prior to the 2018 midterm elections, the bill had to begin its legislative journey once again in the new 116th congressional session.

After the U.S. surgeon general’s announcement that youth smoking epidemic was in part a result of vaping and tobacco companies’ marketing and advertising of flavored products, federal agencies began looking for ways to address the growing problem. The ease at which elementary and high school students can access vaping mechanisms was a battle cry for former U.S. Food and Drug Administration (FDA) Commissioner Scott Gottlieb, who was an outspoken advocate for regulating and penalizing companies that targeted marketing efforts at young Americans.

From soaring prescription medication costs to surprise medical bills, the issue of high healthcare costs has dominated headlines for months. Both sides of the aisle have been outspoken about the issue in a rare showing of bipartisanship. But despite the attention paid to the issue, little has been done legislatively to corral rising healthcare costs for patients and consumers. The recent announcement that the Senate wouldn’t vote on its healthcare cost bill prior to the August recess has left many wondering if the issue would be addressed at all.

In June 2019, in honor of Men’s Health Month, a group of Georgetown nurses, oncology specialists, and professionals from other concentrations volunteered for ONS at the annual Men’s Health Network Congressional Health Screening on Capitol Hill. It was an experience that I will never forget. To be in the offices of the U.S. Congress and to meet elected officials and their staff was incredible, but being able to do what nurses do best—act as the most trusted healthcare professional for patients—was wonderful.

While representing ONS in June 2019 at the National Institute for Nursing Research in Bethesda, MD, I met with my state’s congressional delegation to introduce ONS’s health policy legislative agenda to their offices on Capitol Hill. Despite it being one of the hottest days on record for the nation’s capital, the congressional offices offered a cool place for health policy discussions.

Surprise medical bills—a long-time problem for patients and consumers—was not on the legislative radar until recently. In short order, the issue has quickly moved through the House Energy and Commerce Committee, one of the most powerful on Capitol Hill, to offer some hope for consumers. Part of the committee’s mark up added an amendment allowing for arbitration to address specific medical charges if hospitals disagreed with the agreed-upon rate. Some committee members felt that without it, providers would have limited recourse in special circumstances.

In February 2019, the U.S. Surgeon General declared the rise of youth vaping was the latest epidemic facing the American public. Reversing a two-decades-long trend of declining smoking rates among underage smokers, e-cigarette use and vaping have become commonplace among children younger than 18.

America’s love affair with tobacco has a long and sordid history. As automated machines ushered in a new age of modernization in the early 20th century, cigarettes were readily available as never before. Although some in the temperance movement believed tobacco products were the gateway to alcohol and drug abuse, by the 1930s and 1940s, physicians were touting cigarettes as almost a healing treatment that calmed the nerves and desensitized the body with positive effects. 

An ONS priority bill, the Palliative Care and Hospice Education and Training Act (PCHETA) emphasizes how providers are educated and trained in palliative care, enabling them to provide a higher level of care to their patients. PCHETA legislation—and its reception on Capitol Hill—has evolved from being misinterpreted as training providers to hasten death to a true understanding that palliative care is patient-centered care, and it provides patients and their family members with further treatment options, symptom management resources, and quality of life. In a display of bipartisanship, Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV) reintroduced PCHETA legislation to the Senate floor for consideration.

On March 26, 2019, more than 40 nurses came together at the Maryland General Assembly’s Senate President’s Conference Center for the Oncology Nurses Night in Annapolis. This was the Greater Baltimore Chapter of ONS’s (GBCONS’s) third advocacy trip to the statehouse, but it was the first statewide ONS event. All four Maryland chapters were active in planning the night, and many new advocates were inspired to speak out.

Oncology nurses advocate for their patients every day, and it’s easy to see firsthand the difference it can have in those patients’ and families’ lives. But there’s a way to make an even larger impact by using those same advocacy skills at the local, state, or even national level—potentially changing thousands or even millions of lives of patients, survivors, and families across the United States.

As part of the rising wave of precision medicine initiatives, the National Institutes of Health (NIH) launched the All of Us campaign in 2018. This one-of-a-kind research program aimed to collect data from more than one million Americans, including factors about lifestyle, environment, and biology, to understand impacts on health and well being. The information would help researchers to better understand the individual nature of health to ultimately inform decisions about delivering precision medicine.  

When the Affordable Care Act (ACA) was first implemented, the government encouraged private insurance companies to participate in the health insurance marketplace to increase competition and keep prices low for patients. According to several private insurers, the government committed to reimbursing companies if the cost of their healthcare claims exceeded premiums charged in the first three years. To date, no payments have been made between the government and private insurance companies, and a new lawsuit is making its way through the judicial system.

As challenges mount to find new and innovative ways to provide quality health care at affordable prices for patients, a battle is brewing over what patients can and cannot know about their healthcare costs. On June 24, President Trump released an executive order directing his administration to take steps to improve healthcare prices and transparency to address the pricing woes patients face.

Candidates in the first Democratic presidential debate spent some time addressing issues related to healthcare access. In point-blank questions, they were asked what they might do in support of Medicare for All, especially whether they’d be in favor of eliminating private insurance companies. Many were supportive of the overarching legislation, some were wary of eliminating insurance companies outright, and others flat out opposed it.

Since 2016, then-candidate Trump promised he was going to bring healthcare costs under control. In a White House announcement on June 24, 2019, the president took steps to add transparency to the process by requiring insurance companies, hospitals, and physicians to identify fees and costs in public and simple ways for patients to see in advance and to understand.

In a perpetual search to refine research and scientific advancements in the pursuit of fighting cancer, the National Institutes of Health (NIH) is investing in research that will help practitioners further understand how treatments and combinations of treatments can benefit patients. Through a focus on precision oncology, researchers are examining which combinations of therapies would work best for each individual patient based on a number of factors, including genetics and genomics.

The advent of e-cigarettes and vaping mechanisms has shifted the dynamic of underage tobacco use for the first time in more than a decade. In fact, the U.S. surgeon general declared the situation a national epidemic. Known as e-cigs, vapes, e-hookah, vape pens, and electronic nicotine delivery systems (ENDS), the mechanisms look similar to USB flash drives, pens, and other items not typically associated with tobacco consumption.

The House Appropriations Committee recently released its draft outline for the Labor, Health and Human Services, and Education 2020 funding bill, allocating more than $189 billion in discretionary funding for education and training, medical research, and health care. The legislation includes funding for the National Institutes of Health (NIH), U.S Food and Drug Administration, Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), and Centers for Medicare and Medicaid Services. For 2020, the House Appropriations Committee increased funding by $11.7 billion over 2019 levels.

According to the Centers for Disease Control and Prevention, 50 million Americans experience acute and chronic pain daily. Managing the pain is debilitating and costly, and the impact on the economy is felt through employment issues along with a heightened burden on the healthcare system.

Two U.S. senators from different parties, who hail from states with the largest and most successful tobacco crop, have come together to raise the national smoking age. Mitch McConnell (R-KY) and Tim Kaine (D-VA) have teamed up to cosponsor the Tobacco-Free Youth Act (S. 1541), a bill that would restrict the marketing, sale, and distribution of tobacco products to anyone under the age of 21. A similar bill, Tobacco to 21 Act (H.R. 2411), was introduced in the House by Diane Degette (D-CO).

Healthcare advocates assembled in the U.S. Congress to hear from panelists about the national epidemic of youth smoking. From those conversations, a common theme emerged: many believe that the rise in youth vaping and smoking is directly related to marketing and sales tactics by large tobacco manufacturers.

In March and April 2019, the Centers for Medicare and Medicaid Services (CMS) issued several proposed and final rules that affect patient coverage for cancer-related benefits, payment models, and the paperwork nurses often complete to ensure those benefits are billed correctly.

The word advocacy comes from the Middle English word “advocacie” or “intercession” and the Anglo-French word “advocassie,” meaning “pleading.” As a profession, I believe nurses pride ourselves as being advocates for our patients and their families. I can easily say that most nurses—myself included—think of advocacy in terms of daily practice. We’re always making sure patients have the right resources and knowledge and have their basic needs met to get through their daily treatments.

As the 2020 presidential campaign kicks into high gear, the much-anticipated candidacy of former Vice President Joe Biden was announced. Biden, along with his wife Jill, had to make the necessary legal adjustments to cut ties with their formal involvement in the Biden Foundation, including a number of cancer-related projects. The Bidens made the move to eliminate any potential conflicts of interest with a presidential run.

In the aftermath of the 2018 midterm election, one domestic policy issue shone through as a common ground for most Americans: healthcare costs. In particular, the dramatic rise in prices for prescription medication seems to be a pervasive worry among voters. To address the issue, elected officials in Washington, DC—in a bipartisan fashion not often seen—have consulted and impaneled congressional hearings to understand the economic impact medication costs.

In May 2019, the National Cancer Institute (NCI), Centers for Disease Control and Prevention (CDC), American Cancer Society, and North American Association of Central Cancer Registries (NAACCR) released a report detailing the decreasing cancer mortality rates in the United States. It’s a welcome trend among the cancer community, highlighting past efforts in prevention, screening, and early detection—along with improving rates of treatment success. 

Health care is driving domestic policy agenda, and voters have shown it’s a crucial component in their decision making. The money associated with healthcare costs has been a driving factor in politics year after year. Public opinion polling found that health care is the most important factor when it comes to financial burden for Americans, reports from 2018 indicated that Americans spent more than $88 billion on health care alone.

In a letter to the U.S. Food and Drug Administration (FDA), Senator Dick Durbin (D-IL) shared harsh criticism for the agency’s lack of attention to the youth smoking epidemic. His letter from May 29, 2019, detailed efforts that the agency could be taking to curb the rise in youth tobacco use. The smoking cessation community, of which ONS is a palpable member, has sided with Durbin on the importance of continued FDA oversight on e-cigarettes and the vaping industry’s kid-friendly, fun-flavored tobacco products. Groups like the Campaign for Tobacco Free Kids have been forceful in comments to the agency about the need for stricter regulations on products.

Medicare Part D will continue to give patients access to certain cancer drugs, according Centers for Medicare and Medicaid Services’ (CMS’s) final ruling issued May 16, 2019. The final rule does not allow for utilization controls like step therapy and prior authorizations for patients who are already in an established treatment regimen; does not restrict drugs that have had certain price increases over a specified time period; and does not restrict new formulations of an existing protected class drug.

Government service isn’t forever. Dynamic, transformative leaders enter and leave federally appointed positions for a variety of reasons and new appointments. Such was the case for the National Cancer Institute’s (NCI’s) former director Norman Sharpless, MD, who was appointed to head the U.S. Food and Drug Administration in April 2019 after Scott Gottlieb, MD, announced he would step down as of June 2019.

Washington is the first state in the country to offer a public insurance option to its residents after Governor Jay Inslee signed the bill into law on May 13, 2019. Is it any coincidence that Inslee is also running for president? Coming from a traditionally “blue” state with a strong progressive legislature allowed this Democratic candidate to deliver on a particularly interesting policy.

It’s never too late to honor those who served the United States with great valor, especially during times of war and hardship. In April 2019, a group of federal legislators submitted a bipartisan, bicameral bill to honor cadet nurses who served during World War II. At the time, cadet nurses were not recognized with veteran distinctions, despite often serving in active warzones and filling a desperate need for medical care.

In an increasingly rare show of bipartisan common ground, U.S. Senators Todd Young (R-IN) and Doug Jones (D-AL) introduced the Nursing Where It’s Needed (Nursing WIN) Act in April 2019. The bill would assist nurses in underserved areas of the country—particularly rural communities—that are facing nursing staff shortages.

Unlike other types of breast cancer, a triple-negative diagnosis doesn’t have any of the common receptors found in other breast cancers, presenting potential treatment challenges to patients and providers. To assist patients with triple-negative breast cancer, the Centers for Disease Control and Prevention (CDC) created a new virtual program, allowing patients to consult and ask questions to a virtual coach in the comfort of their own homes.

After recent a best-selling book-turned-movie detailed her story, Henrietta Lacks’ extraordinary impact on cancer research continues to become common knowledge to more people. However, many more are still unaware of how her story, struggle with cancer, and tumor cells changed the face of cancer care. For that reason, Representative Elijah Cummings (D-MD), along with a congressional delegation from both chambers, introduced legislation to both honor her role in history and improve access to medical research to traditionally underrepresented groups.

Nestled in the sleepy suburbs of Washington, DC, lies an influential agency that continues to have a growing impact on every American’s life. In fact, public opinion surveys indicate that the agency enjoys a broad range of support in the federal government and across the country in its work protecting people. Seen almost daily on the evening news, FDA encompasses a vast network of public health priorities important to many people’s daily lives. 

Through a combination of expert clinical knowledge, relationship-building skills, and routine selection as the most trusted profession in the United States, nurses are one of the most impactful healthcare professionals when it comes to addressing patient issues. Challenges—like financial toxicity and limited access to care—are central to nursing advocacy efforts, and oncology nurses know firsthand the negative impacts they have on patients with cancer.

Advocacy is a pillar for both ONS and me, personally. As a professor, organizer, chapter leader, and now ONS president, engagement in oncology nursing issues is an essential part of what I do and who I am. In March 2019, I accompanied ONS staff along with my ONS Pittsburgh Chapter colleague, Grace Campbell, PhD, MSW, RN, CRRN, assistant professor at the University of Pittsburgh, to meet with Congressional Representative Connor Lamb’s (D-PA) district office director.